I used to post as Arnie1970, but that account stopped working.
After the initial scare of a stage 4 cancer diagnosis, a lot has happened.
Four grand children were born( two boys, two girls). I stopped working, and we traveled a lot.
Even though I stopped writing. I continued to have a look at the forum every now and then.
To many familiar people disappeared of the forum due to death, or infighting. The passing on of Big John, Shooter1,Tom67,and many more had a profound impact on my mental state, and I stopped looking at the forum completely .
I had an unconventional treatment path, where my oncologist, after chemo and radiation, continued ADT ( lupron) for two years. After that he moved the injection time up to 4 months( 2x),5 months(2x),and six months(2x). My PSA has not moved since, and is still undetectable after no treatment since May 2023. My testosterone has not yet returned, and may never come back, but I feel a lot better in my head. My body is however going through a strange phase of weight gain all of a sudden. I have gained 10 kg in the last 4 weeks. The next consultation with my oncologist is in August, and I trust that everything will still be positive when I see him.
To all PC warriors out there,
Stay positive, enjoy life, and fight this bitch with all you got!
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ArnieAfrica
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Great news that you are doing so well. I totally agree on Big John, Shooter1, Tom67 and all of the others. It has been tragic that these positive men have passed. I felt shooters passing a lot.
like you , I’m saddened to see great guys move away from the group and/or croak …and I freely admit I’ve cried about others … Urang, Great John …more.
You know ….!!! …. If you take an objective step back and look again :
I worked for a large V.A.Medical center for over 30 years , we had a large nursing home on the grounds. If you’ve ever seen 30-40-50 VERY grumpy old men ( suffering dementia, Alzheimer’s , harsh mental decline etc. ) tied with restraints into their wheelchairs ( to keep the fisticuffs action minimized. ) in the Great Hall for socialization…. If youve ever seen this, you know what group fighting, anger, anxiety is all about.
I would go in there , sometimes, to repair a ventilator or infusion pump and immediately 10-12 of them would roll over ( foot propelled) and start assaulting me , cursing me, spitting on me , hitting me with their wheelchair etc. …. no reason needed, just grumpy old men. Actually it’s kinda perfectly expected if you think about it, if however sad. It’s why they are in there to begin with.
In ways this group is the same thing. A lot of grumpy old men ….sad facing death, angry , irritable from side effects etc. . It’s not surprising to see clashes, infighting etc here …or anywhere like this. Grumpy clashes, personality clashes, frustration. Pretty normal and expected stuff …. Regular every day geriatric life for some of us. I think the mods do a very good job keeping the fisticuffs under control and trying to retain a crumb of decorum. With our patent cross section, everyone co-existing … being happy …. all the time isn’t reality and never going to be.
I’d like to see it incumbent upon ourselves to try to and coexist, still our member cross section contradicts this.
I’ve recently dug my old espresso equipment out of the closet. I’ve discovered that , with the millennials, and Gen something’s, espresso has become a hugely popular thing and you only have to read r/espresso a bit to realize that making delicious espresso is quite easy. No more bitter old yuck …. But fresh tasty wonderful edgy espresso. They’ve delved deeply into it and resolved all the issues, and made it easy. ….. a steaming fresh hot two cup pull …and a bakery fresh croissant drizzled with chocolate ….OMG. !!!! Besides the obvious juxtaposition against “ all the above “ …. Surprisingly, fresh espresso has the ability to elevate your chemical induced tiredness/ weakness “ up several notches and reenergize your morning - day mood. Just an observation you might consider exploring for all of us here.
Back at you brother Kal. Even in my prime I couldn't express myself as well as you do and what's more you're always on the same page as me even if I didnt know it.
Haaaaaaaay my brother ….. thanks for all those flowers buddy . Yeah, you and me and a few others , …. This group could be a good home for us croakers to come and unload …..if only people could see it like that and not take them too seriously / personally . Have a more nurturing heart …less acidic reactive.
It’s smoldering outside here buddy, between 100f and 105f daily this time of the year. Still , thanks to the nearby Sierras…..it’s cool late nite and days up until around noon everyday. It’d be unbearable if not for that daily heat break. It’s good to hear from you big guy …. I hope you are hanging in there, keeping as comfortable as possible….getting in some QOL time when you can. Hope the family is healthy too buddy. Have a good one my friend.
Good hearing back from you too brother. And Arnie thanks for letting me cause your thread to stray a bit. With your post a good thread started with your good news. Glad to see you around again.
Brother Kal I think I still have 2 replies from you tabbed that I never got back with you on. To kinda sum up those I'd like to respond yea I have always thought we are similar except for the mobility card delt you. I connected with you early in my snooping around here in about April 2020 or so. ( that guy with PSA and head to toe mets like me: holy crap, cool dude but has to deal with the skin cancer too. Diggin it out. One tough dude lol).
I've been out of it for awhile but saw some of the posts and man sorry about the driving license. I hope to hell the scooter is as good as having a drive. My car drives to curb side pick up are a highlight of my life. To be laughed at probably be some but it is what it is. Today's pick up 75 F, very low humidity, backroads route, beautiful.
I am way, way behind to update my bio. Really need to post my good results with Pluvicto. The crux has been the Cyclic Vomiting Syndrome I developed that put me in the hospital about 6 months ago. Today I feel great. It showed me just how crappy it really was the past 3 weeks (every type of migraine symptom except the headache). Its a central nervous thing and thankfully I have kept the 30 hours of retching every 45 minutes every 6 days at bay for at least 2 months or more now. Its a weird ass interesting syndrome. Too bad I cant study it from afar lol. The last 3 weeks I finally chose not to listen to music. Even that was too much sensory input. Had to completly tune out in dark bedroom at times just like I did in my youth with migraine headaches. My psyche can get all f'd up with this. Hard to explain the details. But anyway PCa is my main foe. I would be having to take deep breaths and calm myself if on top of this I had not responded to Pluvicto. I am the 1/3 that responds and my Dr. commented I am in the top 10% of the 1/3 that respond so I am very lucky, grateful, I'll try to get a post up soon.
I keep coming back to myself hope you are doing ok. Hot it is man. That desert vibe though is cool. No pun intended. My first experience with that was boot camp in San Diego. Freezin cold in the morning and everyones hair was shaved so top of ears sunburnt and people passing out in the afternoon I remember on one of my 3 trips to Fresno I must have been there in the middle of the hot spell. It was burning hot is what I remember getting lunch mid day.
Nice to hear you Kaliber, I love the way you think and the way you have continued to fight this beast. You're always a great source of encouragement. You often talk about QOL, I too keep that in my head, the simplest of things can bring such joy, there is so much in this world to hate at the moment and very little to love.
Today, we too have some sunshine and I intend to get Ruby out of the barn ( She is an old red tractor we bought for our Ruby wedding anniversary ) and I'm going to enjoy cutting the field, the birds of prey will accompany me flying overhead against the back drop of a blue sky and our 12 year old Border Collie Beau will trot alongside, until he gets tired. I can relax and let my mind wander and look at the field of wild flowers we have left to grow this year. QOL.
Let's enjoy what we have.
Our love to you and the mighty hammer from me and my background App 😊
Ryte on brother lettuce, I love the way you stay out a-head of QOL things too. 😂😂🌼
I lived in very rural Indiana as a child and worked on an uncles tenant dairy farm every summer when school was out. I drove tractors, brought the cows in / milked, helped harvest and make silage feed etc. when we cut the alfalfa fields to make silage and bales , we always had to leave a wide swath of uncut space every few rows for all the animals ( mostly rabbits ) to hide in and not leave sliced up body parts all over the place lol. We knew all those animals were environmentally beneficial and some represented food during the long winters.
We started our tractor by spinning a large side mounted flywheel by hand when we needed it. At 10 - 12 years old I was fit enough to throw full sized bales of hay up onto a flatbed trailer towed behind the tractor after a bailer pass. It’s beautiful and fragrant out there in the country fields, ….. these days everyone is mostly urban …. They miss all that wonderful stuff. I miss it too now and then. It was such a simpler time. You could really stop and sniff the flowers.
Have fun out there buddy … time is precious for us guys, make hay while the sun shines lol.
Sir, you are a Philosopher Emeritus, political scientist, social critic and leading humanist wrapped into one! Hell of a good summing up. I read it several times before commenting.
Normally, when I read something that long, I expect to fade about four paragraphs in. Not so in this case!
Hi Arnie, congrats and all the best! Regarding weight gain: I keep my weight with a plant based diet plus fish, no sugar, less fat, no alcohol (except a little bit of wine at family events) abd daily exercise. I’m jogging, doing the garden and weight lifting plus some gymnastics. Maybe you want to give it a try.
With such quick weight gain, maybe you've become insulin resistant. Happened to me. I had ballooned up to 212 from around 165 pre-ADT. During my ADT vacation I was able to bring the weight back down to 175. I am now back on ADT but with doing keto and lots of cardio I've been keeping my weight stable for now.
Have your insulin levels tested to make certain you've not become suddenly diabetic. Best of luck to you!
I agree, this place and another I used to frequent quite often have lost immeasurable informants on the goings-ons in our world of Cancer...
From those who walk the lonely path and share their experiences, to those who dove knee deep into the pool of knowledge and shared unselfishly their experience and thoughts. And let's not forget those special people who did both and even more, could offer and alternative path away from the doldrums of standardized care when their paths became unpassable in their journey. No offense to any of those who remain walking, talking, among us, no less is their contributions for us mere mortals
I learned so much, crazy subjects from cellular senescence, oxidative stress, heat stress, mechanisms of action among certain proteins, genomics, and the ability to find and read so many studies it's all a blur any more, lol. Is funny, because even with a recent encounter with another new doctor along my journey, I was asked if I was "IN" (working) the medical field? I laughed of course and replied humbly that I wish ($)... But explained simply that I'm just a patient who has jumped into the deep end of the pool of knowledge in regard to my condition so I can be an active participant in my care and decisions. The returned look was priceless
I've engaged my MO in many a discussion, and seem to keep getting stuck on something, since 2018 I believe we discussed this first, about MTD vs MED in regard to pharmaceutical efficacy, metabolism, etc. He's honest and engaging as much I'm sure as it amuses him to talk with me. Alas, a very busy man and one of the nation's busiest and best COE's. I've learned to appreciate it, but know too that it can only go so far. But who has these conversations with their care team? Who challenges their positions and thoughts? Challenges SOC? The resounding answer should be everyone of course... But I'll partially attribute it to all that I've been fortunate to be exposed to on these forums!
That all said... The PCa journey was already a crazy roller coaster to step on to... Manifesting to StageIV made it into a bizarre smash through the Looking Glass for sure! Almost like being on a mile long freight train and being able to move up to the engine and disconnecting the weight behind you and the engine subsequently taking off, doubling it's speed! That's the difference between having PCa and being so fortunate to graduate to the advanced class!
OP is spot on with the mental side of things as well, how positivity, despite all the goings-ons around you, with you, can help immensely and most certainly impact QOL! Eat that steak, enjoy that vacation, time with family and a few minutes with those here, that all mean something to you!
I've shared this before, but I guess is part of my mantra. An old Japanese saying:
Ichi Go Ichi
Meaning "Each Moment Once"
Enjoy my friends... Each and every moment and Keep on Truckin'!
Great thread. I have been around since then as well and feel the same losses, so many for multiple reasons. I also feel grateful for the many who are still here that come and go, bee and old. I never stop learning and as much as I would like to forget about the disease during my 3 month interval of "life goes on", I can't. Thanks to all and yes let's keep fighting.
Also, I believe your referring to Great John, he posted food porn quite often? I could be wrong my memory isn't what it used to be but for some reason Big John didn't sound right.
Re: weight gain-Last year I joined Weight Watchers online. I lost 20 pounds. Mindful eating plus extra exercise helped. The first year off ADT I lost no weight. Weight Watchers helped in year 2 off ADT.
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Treatment Update IMRT with ADT 18 months later
One Year Post Diagnosis
Follow up on Zytiga 4 1/2 weeks later
Courageous 12 year battle
Will the need to pee five or six times per night ever end?
